The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

Everything moves in my vision - could it be MAV?

Back in October 2015 I woke up feeling swimmy headed. I developed a awful forehead headache that eased when I closed my eyes. My vision became blurry and I found I couldn’t read writing at various distances, even the massive prices on the front of petrol forecourts were blurred and shimmering. At this time I was very fatigued and used a computer for 16 hours every day for a while, so instantly assumed it was just eyestrain. When I went to supermarkets it was so bright and shimmering, and the end of aisles looked curved and bent. I couldn’t read price labels and when I tried to read the small print on food packaging, such as ingredients, I found I felt sick and it was like my eyes felt they were darting all over the place trying to lock on. When I sat in chairs I felt motion sick, and I couldn’t look at any computer screen as it made me feel ill. Driving in a car was fine but when the car stopped I would get a rush of queasy dizzy sickness hit me for 60 seconds. I felt light headed and dizzy (non-vertigo) all the time, but especially when moving. I found when I walked things bounced and swung side to side, especially things further away. I found it hard for my eyes to differentiate between things moving and those staying still, if they were in the same visual field (for instance clouds passing by the moon, the moon would move along with the clouds in my vision). Everything I looked at, even if I was stock still, would move slightly, mainly right to left but also hovering and floating, as though I was stood on the deck of a docked boat and looking at everything on the nearby shore. Also some things would shake left to right quickly. On the 2nd month my awful forehead headache changed to a hungover style feeling headache. In total my bad headaches lasted 2 months, but everything else has stuck with me, except now that supermarkets don’t look as bright, and things are slightly less blurred than at the start, but my focus is still not right and I now need glasses. I constantly feel visually sick and dizzy, by this I mean my eyes feel sick. Thankfully I also don’t get that rush of sickness happen when a car stops now. My bouncing vision differs daily, today I went for a walk and it wasn’t too bad, but that never lasts.

What in the world is going on with me ? I thought it would just go, and I saw optometrists who couldn’t see anything wrong with my eyes. I went through a few months of dry eye treatment as I was desperate to try anything. Also tried prism glasses. I am finally going to a GP on the 2nd February and I hope I can start to get this fixed. I was 34 stone back when this began and thought maybe it was weight related, but I am now 24 stone and no change other than the first 2 months. I know I am still huge but if it was weight related I would have thought it would have eased a lot by losing 10 stone.

Any ideas ? I am posting here as I found this place via Google for similar symptoms to me. I think this is the only health forum where things sound similar to what I have.

Thanks all !!

Afraid I can’t help with a ‘diagnoses’ for you - as I’m not even sure of the correct tag for what ails me! However, I have identified almost all my symptoms, though not necessarily in the same combinations, from reading threads here. I find it helps to read how ‘real’ people describe their problems as opposed to ‘clinical’ descriptions. I have also found ideas and encouragement as to how to find and control my personal triggers. I hope your GP can shed some light for you, as for myself, I found the ‘not knowing’ part the worst!
What I really wanted to say is congratulations on your weight loss!! That in itself is a huge success story!!! Although I doubt your weight was the reason for your problem, there is no denying that a better overall health is a good start to fixing any problem.
BYW - a lot of what you describe fits me - certainly bright lights/supermarket lights and the computer are problems for me. (I have set the brightness on all screens pretty low). I also went the optometrist route to no avail.
Anyway - you are not alone! Good luck

Hi There!

I have a diagnoses of MAV (migraines since childhood) and possible hydrops . I share similar symptoms. I have 24/7 bouncing of vision and shimmer or quiver of stationary objects, this is called oscillopsia. Oscillopsia is usually seen in patients with severe or complete bilateral loss . I don’t have either. I have had these symptoms since age 15 and am now 56 years old. I forgot what a stationary world looks like.

I have just recently developed the car sickness , motion sensitivity which you describe. These two symptoms have been greatly helped by 20mg daily of a drug
Called Nortryptiline.

I would suggest seeing a otoneurologist who can run various vestibular testing . A good evaluation is imperative. One needs to rule out various causes of vestibular disorders. Check out the VEDA website as well. There is a ton of info on dizzy issues. I hope you find some answers and relief of your symptoms as well!

1 Like

Hi there. Your symptoms sound all too familiar to me. It was earlier in 2015 I was hit with this but luckily I was referred to a neuro-otologist in early on into it so I’ve been able to get a handle on it. It’s terrible you’ve been suffering for so long without any help.

You’ve done so well to lose all of that weight but I don’t think that has anything to do with it. Saying that having regular meals to keep your blood sugar steady is an important part of managing migraine so don’t go skipping meals or anything.

Early on, before I knew what was wrong I got my eyes checked too as my vision was much like yours. My doctor says basically your brain isn’t trusting the information it’s receiving from your eyes and that’s why it all distorts etc.

I suggest getting referred to a neuro-otologist for s proper diagnosis. I’m sorry you’ve been feeling like this for so long.

@Vscience You explain the eye symptoms very well. I have many of the same issues, even went to my ophthalmologist. He did find I had a slight astigmatism and near sightedness, not enough to absolutely need glasses, but he recommended I try them since I was having blurred vision (among many other symptoms). So far the prescription I got is making everything far away MUCH blurrier, so I need to take them back in. I have also looked up research on the prism glasses and it seems like that could be something I could try. It sounds like you are not in the US so it may be a different concept where you are, but were your prism glasses measured with a unit less than 4? Did they help you at all? Thanks!

Yes, my balance physical therapist was the first to point to MAV bc visual disturbances and protracted severe vertigo are the markers. I was flummoxed bc no headache but classically I had a history from about a decade prior.

So yes. Cobblestone sidewalks, light patterns, sunbeams, today was dentist’s head moving against bright lights. I have kind of (we will see long-term effects) find a focal point and be very still bc fight/flight panic is my natural response.

I recommend partnering with a PT who specializes in balance. In addition to rehab and knocking my crystals loose, they know the specialists.

Hugs.

Dear eye sufferer,
Did you try to see a rehabilitation optometrist along with a neuro-otologist? It may be that you have visual-vestibular dysfunction. You may have a problem with the inner ear. computers are lethal-they give off blue light which is damaging to the eyes. There are eye glasses to block this light.
I had a concussion simply by banging my head when entering my car. I ended up with visual-vestibular dysfunction which is going on for 1.7 years. I feel much better now, but most Drs I visited had no idea what was wrong with me.

1 Like

Hi NYGAL,

I have this too. Does yours match this description:

Not noticeable when watching movement or moving yourself
Everything bobs up down side to side when looking at an area where nothing is moving
Amount of movement seen correlates with stress level.

I’ve had it for 7.5 years. I think this is likely persistent migraine aura and our vestibular migraine is a prerequisite for the oscillopsia to occur. there is an article about it by dr Daniel jacome
https://www.webmedcentral.com/article_view/3984

What are your coping strategies? I’ve been on and off Zoloft since onset to manage the depression /anxiety. I seem to be able to function quite well and ignore it when symptoms / stress is low.

Hi David.

Sorry for the late response. Thank you for sharing that article. I will be printing it up and bringing to my neuro! Very interesting as I do not nystagmus that would correlate to my Oscillopsia. I do show on testing a bit of nystagmus that points to a central cause for my symptoms. Hence, the MAV diagnoses. I think that after having Oscillopsia for 40plus years, my brain has adjusted in some way. I do not remember what a
Non-Moving world looks like.

Initially, my only symptom was the oscillopsia without motion sickness. I’ve just recently in 2016 had an exacerbation and a “change” in symptoms. Now I do experience motion sickness which has been fairly controlled by Nortryptiline.
David, do you experience any dizziness at all besides the oscillopsia?
Did your testing show any deficits in your vestibular system?

I wish I could offer you some coping strategies but I really don’t have any
Per se. Just one day at a time. I will tell you that I have come to terms with the fact that my Oscillopsia is permanent. My Doctors have told me that in my case that drugs will not stop the bouncing .They will help with the other symptoms.

Honestly. After 42 plus years of Oscillopsia this is my norm. If my world ever stopped moving, I’m not sure if I would be worse off. Scary thought.

I hope you find some relief of symptoms. Glad to hear that Zoloft gives you some relief. I don’t find that stress exacerbates my Oscillopsia but it effect my headaches.